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Audrey Update: One Year

For 5 years I’ve waited to write this post. I’ve dreamed of it, written it in my mind, and anticipated its “publish” moment, which I’d planned to be Monday evening. It’s good, it’s (mostly) positive, and with all the thought that I’ve put into it, it should be easy to write….

but it isn’t.

Instead, I’ve tried 5 times over and each time I do, I end up in a mess of tears. Sometimes they’re spilling down my cheeks, other times I feel like they’re falling from my heart drowning the breath right out of me.

I’ve been trying to figure out why it’s so hard to put everything there is to say into words. The best I can figure is that it’s this weird blend of relief, joy and fear – what if I put it into words and then…the walls come crashing in and take the good away.

I’m a rational, God loving, woman of faith, who knows better than to believe that saying it out-loud will make it go away. I don’t believe in “knocking on wood” or “Murphey’s law” (Ok, maybe I believe in that law…just a little) and know that this won’t change reality but there is a massive part of me that’s afraid that it will. That the enemy of my soul will take my words, smash them up and smear them in my face.

I’m not going to let fear win though, I refuse to live in the negative “what-ifs” of our future and let it destroy the beautiful “here & nows” of our present. So I’m going to swallow back the urge to barf everywhere take a HUGE breath, and jump

For the first time, we have reached a 1 year hospital milestone for our Audrey!

Monday, August 18th 2014 was exactly 1 year from the last time I awoke, in the wee hours of the morning to the wails of a fever ridden, sick little girl. One year from the last time I drove in the dark of night begging God for our safety, for my baby, since the last time we were admitted for tests, IV’s and medicines. In 2 days it will be 1 year since the last day spent, an admitted patient in a hospital.

There are scarcely words to express how saying that, knowing that feels.

Audrey’s health journey is far from over, I know that. There are still issues and concerns we face on a regular basis (see update below) but this milestone feels HUGE to me, to us.

For the first time in 5 years I feel like I can actually dream of a future for Audrey that doesn’t include hospital stays. I can hope for answers or miracle cures, that will allow us to move on. For a day when I won’t look at her with suspicion of what’s under the surface, or touch her face in the night with trepidation that her skin will be on fire. For something other than what it’s been since she was 10 months old.

Hope. That’s what it is, pure, beautiful hope – something I’ve felt void of for so very long! (and then there were more tears)

So now, for the update:

The Good – on a daily basis Audrey is doing well. She’s spunky, filled with laughter, life, and words, so many words (this sister can out talk her Mama, a feet many deemed impossible….). She’s reading, and learning new skills daily and ready to start Kindergarten. There are teeth falling out, and new ones quickly coming into replace them and her hair is finally growing in at a normal rate. The last patch that was thin, with a little baby hair from the last time it fell out has grown out, being replaced with beautiful “big girl” hair!

The Not so Good – There are still days Audrey is SO pale, her energy lagging & unusual lethargy sets in. She is growing in height (WHOOT!) but still losing weight. Her appetite is back to normal, if not a bit increased but we can’t seem to get her weight up. Her urine also still gets the mysterious smell, which has a few times now migrated to her skin. One morning in particular the bizarre smell coming from her body was so pungent it had permeated her sheets, bed protector, clothing, hands, and hair. It took a long shower & wash to get rid of the worst of it. At her last blood test most of her numbers had improved (!), some still concerning and her immune markers were dropping. Not what we’d hoped for but MUCH better than what they were.

As always there are no explanations for us as to what is happening and for the moment, while I have calls into different docs we have no appointments waiting. We’re in wait and see, watch and record mode – who knows what her body is going to do, good or bad.

Today though, I’m going to relish this moment, the ability to write this post and the hope that I have that God is good – no matter what the outcome is.

Thank you for all of your prayers, love and encouragement over these years. To the friends who have listened to me go over and over all that is happening with our girl (I’m trying to not talk about it any more, I know everyone gets tired of hearing it) and who are encouraging us on this journey. We love and appreciate you all!

One thought on “Audrey Update: One Year”

oh Mama. I’m so thrilled for you and yet I ache for you. Our critical illness journey is just 4 months new right now, but from day 1 I have been thankful that most of the uncertainty is behind us now. Of course we will have many unknowns down the road, and for the rest of his life. I know that. Yet even as we heard our devastating diagnosis, I thought of you as you agonize with the unknowns as to what is going on with your baby girl. Continued prayers for your sweet family. xoxo

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Gives me reason to believe…

"Now faith is confidence in what we hope for and assurance about what we do not see."
Hebrews 11:1